Lauren Hameed

Laura Hameed is a seasoned executive with a deep commitment to families impacted by rare diseases. With more than 20 years of cross-sector leadership in nonprofit organizations, biotech, higher education, and government, she brings to IRSF a rare blend of mission-driven passion, strategic vision, and operational excellence. Throughout her career, Laura has built and led organizations at the forefront of medical innovation and community empowerment. Most recently, she served as Executive Director of CureDuchenne, overseeing operations, board engagement, fundraising, and strategic planning for the internationally recognized nonprofit. Under her leadership, the organization transformed its development strategy to drive sustainable growth, implemented organizational process improvements, and developed an Impact Investment Fund. She led a dynamic team responsible for delivering high-impact fundraising events, family education programs, and a national summit that united regulators, advocates, and industry leaders. Previously, Laura served as the founding Executive Director of CCF, a nonprofit gene therapy initiative. She helped accelerate and clear hurdles to therapeutic development for ultra-rare, mutation-based neurological disorders like SPG50 and AADC deficiency—conditions similar to Rett syndrome in their genetic origin. Earlier in her career, she led GeneSegues Therapeutics and RoverMed BioSciences and was a co-founder of Elpida Therapeutics, which is focused on bringing innovative gene and cell therapies to rare disease communities. Across these roles, Laura has championed scientific progress while keeping the needs of patient communities at the forefront. A dynamic communicator and connector, Laura is known for her ability to build relationships across families, clinicians, donors, researchers, and industry. She is equally committed to fostering strong organizational cultures—empowering teams, mentoring talent, and creating the conditions for sustainable growth. Laura previously held elected office in the Minnesota House of Representatives, where she led on healthcare policy, and served as a Regent of the University of Minnesota system. She holds degrees from the University of Minnesota and Minnesota State University, Mankato, and is an Aspen Rodel Fellow in Public Leadership. A native Minnesotan and mother of six, Laura now splits her time between Minnesota and San Antonio, Texas, with her husband and their two dogs. She is proud to lead IRSF into its next chapter—focused on accelerating treatments, strengthening community, and empowering every family living with Rett syndrome.